How Deep-Rooted Childhood Bonds Shape Your Adult Caregiving Style

00:00

If you've seen one dementia caregiver, you've seen one dementia caregiver, and I know that's probably not the mantra you expected. Today's guest is going to show you what that means. Her name is Tami Anastasia.

She's a dementia care expert, an educator, a speaker, and she's the author of a book that explores how our personal history and family bonds can affect our experience as a dementia caregiver. You'll want to save this episode. It's number 30.

You're listening to My Spouse Has Dementia, a podcast that uses personal stories, occasional interviews, and simple rituals to support dementia caregiving spouses. I'm Zeta Christian, writer, lifecycle celebrant, widow. My husband had Alzheimer's.

Today's episode is one of those occasional interviews.

I find value in every book about dementia caregiving, the informative how-to books, the gut-wrenching memoirs, the storytelling novels that use fiction to give readers a glimpse into what caregiving might look like.

But the book I'm talking about today weaves all of those approaches into one. The title itself contains a powerful promise. Dementia, Caregiving, and Personal History: How to Help, Cope, Connect, and Heal.

The author is Tami Anastasia. Tami, welcome to the podcast.

Tami: Well, Zeta, thank you so much for having me, and it's really truly a pleasure and an honor to be here.

Zita: Thank you.

Zita: One of the things that I love about your book is how you give information, you give resources, you have all the information that people look for when they want to know the details about dementia, about caregiving, about what to expect, and what the

timelines are, and all of those things. What you do that I have not seen other books do is connect all of that information with the story.

And to me, that's the best way for us to learn, not only because it's that idea of show don't tell, and as a fiction writer, I mean, that's my mantra, but also what the stories do in some of those cases.

It can reflect to the caregiver, like do I see myself in that situation? Do I see the person I'm caring for in the situation that you've described? So there's a whole other level of accessibility and the opportunity to gain deeper meaning.

So I want to start off with one of the things that you wrote in the book, and we'll kind of go from there. Okay.

2:48

Zita: You said a lifetime of experiences influences how each of us sees the world, and dementia doesn't erase that history. In fact, dementia often brings it to the surface in unexpected ways.

You talked about how there's a past connection, or certainly could be a past connection, when the person with dementia keeps asking the same question over and over again, or in my case, as a wedding officiant, I stopped booking weddings when I

realized how fast the disease was progressing. But people booked me eight months to a year in advance, so I had contracts I had to fulfill. So I would have an aide come in, stay with my husband, and all of that part went okay.

But when I would get home, the aide, Pamela, she was wonderful. She always said, Dick just kept asking, Where's my wife? Where's my wife?

Where's my wife? So when you hear those expressions, what do you glean from that?

Tami: Yeah, it's a great question. So first, I think I have to say what my background is to understand why I go for the deeper dive.

Zita: Oh, please.

Tami: Yes. So I have a master's degree in counseling, and I have a private practice. And the primary person that I work with is the primary caregiver who is caring for a loved one living with dementia.

That could be adult children. That could be spouses. It could be relatives.

But they're the person that I work one on one with. And because of my counseling background, I've been noticing that there tends to be more to the dementia behavior than we give attention to.

For example, when I'm working with a primary caregiver, I really go for a deep dive and I ask specifically, what is your loved one saying? What is the tone of voice?

And when you ask clients, my clients, to role play, they do a beautiful job being their loved one. And so it shed some light on me to think, you know what, there's something that more deep into this. So for example, abandonment issues.

People have abandonment issues. People have neglect issues. People have rejection issues, trust issues, abuse issues.

And sometimes the person living with dementia is reliving that because their brain isn't capable now of suppressing those memories that could have been traumatic, and they resurface.

And the other thing that happens with dementia is they confuse the past with the present.

So when they say certain things and there's a certain tone of voice, and the language is so specific, I will explore to see if there's a deeper connection, some relation or some incident or event in their life when they were younger.

And I will say nine times out of ten, I can bullseye it with asking and exploring and exploring and exploring.

Now, not 100%, but I would say at least 95 - 98% of the time, if you explore behind the words and what's being said and how it's being said, there's often a personal connection of something that has happened to them in their past, and they're reliving

it and they're verbalizing it. And we tend to dismiss, oh, it's just the mental behaviors. And I thought, no, this is too specific.

It's the, again, the way it's said, how it's said, the language, the wording they use makes me think that they've been exposed to something prior to dementia.

Zita: So, for instance, for my husband in that late stage, not the last stage, but that late stage, when he would keep asking Pamela, where's my wife, where's my wife, where's my wife, he could be expressing abandonment issues.

And that would certainly fit with his childhood for sure.

Tami: Yeah. And then you have this information that, wow, this is, he is very fearful, but it's more than just being fearful, it's the fear of, are you ever going to come back? What if you leave me?

And knowing that we have this abandonment issue in his past allows us to personalize the care even more, allows us to really provide the language and the care that makes him feel loved and cared for and messaging he may have never received when he

was younger, that we now get to message him today to make him feel more secure and make him feel that there's a deep connection and you're not going anywhere and that you will always come back. And we can communicate and personalize the care even

Zita: Would I be correct, then, in assuming that when a person with dementia also might ask, do you have your keys?

Are you going to be safe? Will you call me when you get there? Of course, this is assuming that the person with dementia still has language to express those kind of concerns that maybe that person had some kind of a trauma in childhood.

Or what about just the repeated questions that, you know, like, what time is it? What time is it? What day is it?

What day is it? What day is it?

Tami: Yeah, that's a great question. Yeah. So, you know, there's many facets to dementia care.

There's many facets and complexities to who we are as a person, right? And so we will hear certain things, right? Want to go home.

We'll hear what time is it? What day is it? What are we doing today?

And sometimes that's just basic needs that need to be met, right? A structure for a person with dementia is critical. And I'll hear more and more repetitive questions and more and more, where are you going?

What are we doing today? Where are we going? What are we doing today?

You know, you think about most of us have, you know, we started in nursery school, we go to, you know, elementary school, we go to high school, maybe we go on to education, but we, and then we work. So we've had a very structured lifestyle.

We also have purpose and purpose sticks with us till end of life. And I need to still feel important. I need to still feel I belong.

I still need to feel a connection. And that routine and that structure for the person with dementia is critical. It allows them to feel safe.

It allows them to feel secure. It creates predictability. It creates consistency.

And when the person with dementia is left on their own and has to try to figure it out, it can create anxiety. And I start asking these repeated questions. Now, certain questions that I'll hear, for example, where are you going?

When are you coming back? Where are you going? Where are you coming back?

Often that could also, again, if I have abandonment issues, that becomes even a deeper and more intense emotion and feeling.

So we're going to have to spend a little more time personalizing our responses and our care to give that extra reassurance that that person needs. So there are phrasing. Here's another one I'll hear quite frequently.

• I promise I'll be a good girl.
• I promise I'll be a good boy.
• I promise I'll do better.
• What can I do? I'm sorry I'm such a burden.

You start hearing those things, and that also will clue me in, hmm...What's gone on in their childhood?

So recently in a support group, for example, the woman's husband said, what did I do that was so bad that I deserve this? She moved him to a care community.

I said, by any chance, did he come from an environment where the father or the mother or the parents, or whoever the primary person was caring for them, was very critical and judgmental? And she said, oh my god, how did you know that?

I know that because of the question and how it was asked, and the tone it was asked, the way it was asked. And she said, oh, absolutely. The father was so judgmental and so critical.

And like most kids, right, we're bad and we get punished. And so he thinks his wife moving him to a care community, he's being punished for being a bad boy. And that's why he's at the care community.

Zita: Oh, gosh, how on earth in the present day, how do you compensate for that kind of, I want to say abuse or trauma, but certainly some kind of challenge from the past.

I mean, what caregiver, I mean, I'm thinking about my experience and those of the other people in my dementia care support group. We don't get that kind of training to say that this happens.

Tami: Here's how to understand what might have been going on in that person's past and how to help to calm anxiety, to make a first person feel secure, to affirm your love.

Zita: Oh my gosh, I mean, the more I'm learning about this, like the more, oh, I'm seeing this problem is bigger and bigger than I ever anticipated.

Tami: Yeah, it's, you know, it's, I guess I wrote this book for several reasons. One, to bring to the surface that there's more than meets the eye when we deal with dementia behaviors, right?

And what a gift if we could use the dementia journey to give them language and care that they never received when they were younger. And now when they pass away, their soul may be a little more healed.

And then also what about the caregiver? The caregiver has also been subjected to different life events and circumstances.

Zita: Yes.

Tami: And believe me, they get triggered too, right? A good example is I was helping one of my clients and her mother alcoholic, but mom's not an alcoholic now that she's had dementia, and she stopped drinking years and years and years ago. But guess what?

Mom's dementia behaviors are triggering my client's reaction when mom was an alcoholic. Because those behaviors are all too familiar, and we have to separate mom as an alcoholic now, and then mom as a person living with dementia.

She's not an alcoholic with dementia, but the behaviors are triggering my client. So the dementia journey is giving us an opportunity to heal old wounds in her.

And then how do we just survive this journey and yet get value from it because we go deeper than, oh, it's dementia and it's an impaired brain.

But it's how we connect and how we respond and how we honor one another, honor my experience, who I am as a person, my triggers, as well as understanding, and then providing personal care to the person now who has dementia.

And how do we bring comfort to them?

13:37

Zita: This is perfect because one of the things that I love so much about your book is how you look at dementia and you look at the past.

And you show how the past affects not only the person with dementia now, but also the caregiver now. And that's where I want to go here. I want to talk with you specifically.

Two things. One, about how the past affects the caregiver. I mean, talking about different, you call them attachment styles.

And I wonder if you could look at those, if you could talk about the whole kinds of what attachment patterns are.

Tami: Sure. So we all learn very, very, very, very early on. We develop attachment styles based on how we've been cared for pretty much.

So we have different attachment styles, but attachment styles are internal. Attachment styles are going to help explain, if I understand my attachment style, and it can be more than one, it can flip-flop.

You know, how I coped when I was younger and how I cope now might be a little different.

But it's important if we shed light on understanding the attachment style, hopefully will help the caregiver think, oh my God, I'm not crazy, and reduce the self-criticism, and reduce the deprecating and the guilt that they struggle with, that the

attachment style is sort of, I hate to say it, instinctive, like it's so ingrained and it's so internal. And we could probably associate attachment style might explain why I react the way I do. This is the why.

Then we have what we call family roles, which will explain how I cope, right? Behaviors. So think of attachment style might explain the way I react, how I internalize things.

That's attachment style. And then family role, what role I played within my family is how I learned to cope, is how I learned to kind of survive.

So you've got kind of two overlapping things that happen that we learn very, very, very early on in life. That conditions us in how we react and how we respond and how we cope and how we feel.

So I want to bring to the surface that we all have attachment styles. We all have a role within our family system. And all of those things can affect how we care, how we cope, how we feel, what we do.

And so I just wanted to bring to the surface again, it's more than just being triggered. It's about why do I get triggered?

Zita: Oh my gosh, that makes so much sense.

Tami: And then how can I do it differently? Or how can I educate? Or how can I use this information to benefit me, to help me feel better about the care I provide and how I'm affected and how I cope and how I react?

You know, caregivers are so judgmental of themselves and have high, high, high, high expectations. And I hear it all the time.

And if I can bring information to you that helps give you a better understanding, it's not about blaming, it's not about shaming, it's not about criticizing, it's not about judging.

It's all about understanding and understand I'm doing the best I can. And now can I give you knowledge and information that can shed some insight and some light about why I react and the why I do what I do?

Then it gives me permission to explore and do things a little differently, but it also allows me to accept and understand and acknowledge this is why I am the way I am.

I'd rather that than the self-criticism and the judgment and the blame and the shame. Oh my gosh, right? We got to minimize that.

Zita: Yes.

17:42

Zita: So I want to get specifically into these different styles of attachment.

Because I have to tell you, as I'm reading through them and I'm highlighting, and I'm saying, oh, I see myself in that one, I see somebody else in that one, and I understand things can overlap and it's not like a rigid one kind of thing.

But I do want to look at them individually. So that first one, the secure attachment. When I'm looking at that one in your book, you talk about how maybe this is something on like on television like leave it to Beaver or something like that.

Or you grow up with this secure style because you probably had parents who were available, responsible, responsive and supportive and your needs were met, and all everything, the fantasy growing up.

Tami: Yes.

And what do you learn? And then how, what kind of a caregiver does that make you if you were fortunate enough to grow up and to have this secure attachment style?

Yeah. I mean, so I do have to honestly admit, I love Leave It To Beaver and I watch Leave It To Beaver. I have a term called "fantasy family" and "reality family."

So maybe down the road, we'll talk about that, but that's in the book too. So secure attachment, yes.

And just so you know, secure attachment is something we can develop, even in our adulthood, even though we may not have been raised in ways that would make us feel more secure. This is what I love about the Dementia Journey.

This might give us tools to make us feel better and to undo the messaging that's been so negative, that's had such a profound impact. Dementia Journey allows us to rewrite those words, to rewrite those scripts.

So the secure, usually it's from parents or whoever the primary people were that raised you. You know, they're emotionally available. They're consistent exactly like you said.

So in caregiving, the secure attachment has a little more confidence. They're okay with being close. Their closeness is not a threat.

And then also they're able to set boundaries. They're able to collaborate. They have a better tendency to delegate and not feel that they're weak or not feel that they're failing.

And they can also make mistakes and not feel they have to be perfect. So that's sort of your ideal. And, you know, there are people who really do feel quite confident and feel secure about what they do.

And if they don't feel secure, they'll reach out for support. So but the secure attachment, obviously, that's what most of us would all like to be, right? To have that confidence, not perfection, but that confidence.

And I think in my private practice, that's one of my goals that I can, no matter who the person is, I can build up that self-competence, maybe provide some of that stability that they never received, and that validation that, you know, it's okay,

your feelings count, your feelings matter. your feelings count, your feelings matter.

20:34

Zita: So that's one attachment style. 

Next is the anxious attachment style. What can you tell us about that one?

Tami: With anxious attachment, affection was inconsistent. There was times they got affections, and sometimes times they didn't get affection. Very inconsistent.

So that can be very confusing. So then love and attention and approval were very unpredictable or they were conditional. Like if you're a good girl, I'll give you this.

But if you're not a good girl, you're going to be punished for that, right? So there's the inconsistency. It's not that unconditional.

And so in caregiving, what happens is the anxious attachment can over-give. Like they seek a lot of reassurance, external reassurance, lots and lots of love going with dementia to give them the reassurance.

And as we all know, people living with dementia can't do that at certain points because as dementia progresses, they lose that ability. They get that blank affect and many people interpret it as, oh, they don't care.

They don't love me anymore and has nothing to do with that. But the anxious attachment is going to read into it, take it very personally. They'll feel rejected.

So they tend to over give and they seek constant, constant reassurance. And they struggle to delegate. And also they feel very guilty if they need to take a break.

And they're always living with, am I doing the right thing? Am I doing enough? Constantly, constantly questions themselves.

And that's the anxious attachment.

Zita: Wow. All right. So then let's go to the next one.

Tami: And let's make sure we say none of these are judgmental statements.

None of these are labels. None of these are meant to be labels. None of these are to be critical or judgmental in any way.

It's just shedding some light on how we've learned to feel closeness or not feel closeness. There's an understanding about who I am and why I'm the way I am if we understand these attachment styles.

22:43

Zita: The attachment called avoidant.

Tami: That person has to develop a strategy to cope with emotional distance.

Zita: Yes.

I can see how some of these different attachments have overlapping, but there are subtle differences as well. Talk with me a little more about that whole avoidant attachment.

Tami: Yeah. So avoidant attachment will be where I'll keep emotional distance. And avoidant does very well task-oriented, task-oriented, task-oriented, you know, to compensate and to keep that emotional distance.

I'll fixate on the task. So some caregivers are really good. They're task-oriented, task-oriented, task-oriented, but, we get a little bit into the emotional realm.

It could be pretty uncomfortable, a vulnerable place to be. So the avoidant attachment tends to really hone in on task-focused versus emotional connection. So they may offer very little comfort.

They were, again, emotionally probably criticized. You know, let that go in one ear or the other. You're too sensitive.

And so you learn to block off a little bit that emotional. You don't put yourself in a situation where you can be emotionally vulnerable. And so the way I compensate for that is I overdo, meaning I focus on tasks.

I'm really good at planning. I'm good at organizing. But, uh-oh, you need some emotional comfort.

That can be a little vulnerable place to go because I don't know if I'm going to get beat up. I don't know if I'm going to get criticized. I don't know if I'm going to get rejected.

So they keep their distance emotionally, but are fabulous with tasks, being task oriented.

Zita: But I can also see where a person who, you know, who has that kind of attachment style, because they don't want to attach emotionally, my guess is they're not likely to be very patient. They're not going to look for a way to soothe.

It's going to be more, I already told you that. You know, don't ask me that again. I just told you five minutes ago, or we already went through that yesterday.

Not being able to see that a person is struggling.

Tami: Yeah.

Zita: Or is that too harsh?

Tami: I think it's something just to be aware of, that you don't have to be just avoidant, you know, attachment style to reach that point. Because at some point, you know, it is so exhausting, and we've already talked about this a hundred times.

But you're going to find the person who is uncomfortable in the emotional arena will tend to dismiss it and deflect it more frequently or more often because it's not a comfortable place to be.

Zita: Well, then, is that person also going to be the one to say to others, Oh, no, I'm fine. I don't need your help. I got it.

I can handle this.

Tami: Yes. They'll be the one that says, you know, because I can't put myself in a vulnerable place. It's all about protecting my emotional well-being.

And so, because I've spent so much time protecting my emotional well-being, it's hard for me to go there emotionally. Now, that's not to say they can't change. This is again, just to shed some light like, oh, no wonder I do this.

No wonder I do that. No wonder I say that. This is just to bring some sunlight into understanding why I may do what I do, because the caregiver is going to say to themselves, boy, I'm just harsh.

I just don't have time for this. And I want them to see they're not harsh. These are not flaws.

These are just patterns that we develop to protect ourselves and to cope with life. I don't want you to take this information and judge.

It's to help you shed some light like a lightbulb going off, like, oh my god, no wonder I feel uncomfortable in the circumstances. No wonder it's hard for me to ask for help. Not to judge it, not to criticize it, and again, not to blame or shame.

Our culture does a good enough job doing that. So it starts within us. We got to break that habit.

And if we can understand more about why we're the way we are, then it opens the door for exploring other options, exploring different ways, and still respecting that these things are in place because this is how we learn to cope.

This is how we learn to survive. Dementia care challenges us to the very, very core, which is why it can be so profoundly healing.

So it's just to understand that these dynamics resurface when we're carrying with a loved one with dementia because this is how we learn to develop relationships. It's how we dealt with conflict. It's how we make decisions.

All of these things play a role. And again, we're talking about different attachment styles. But again, it's just to shed some light on giving us more self-understanding, giving us more self-awareness, and giving us more grace.

Zita: You just used the word "understanding."

And I'm wondering, the person with this particular style, this avoidant, if it's always, I can handle it. No, don't worry. I'm fine.

Then if the person hearing that goes, well, I believe what they say, then I can see the next step of that caregiver easily being or feeling misunderstood, or nobody appreciates me.

I mean, if they don't say anything, if they don't say, yeah, I need help. Yeah, I'm struggling. Yeah, I'm not sleeping.

Yeah, can somebody at least run to the grocery store for me? And instead, it's always trying to make do, make do, make do because they're so concerned about I can do it all. And then it's like, well, why doesn't anybody help me?

Why doesn't anybody understand me?

Tami: The reason for this book is to give everybody a better understanding. Even the person, you know, you're in the family, understand one another better. You know, we do have the realities.

Caregiver burnout, we have caregiver stress, we have caregiver depression, we have compassion fatigue. I mean, this is where we'll see that because for, let's take the avoidant attachment style.

This person's gonna be much higher risk for caregiver burnout, for sure. Caregiver compassion fatigue, you know, all those things is just gonna be at higher risk.

At some point, though, often the caregiver will get to a point like, I'm having difficulty surviving this. I don't like the person I'm becoming. I don't like how my life has come to a halt.

So the caregiver at some point, which we'd like to try to head that off before we get to that point, but the caregiver at some point does reach a breaking point. And that also is an opportunity to say, how do we do this differently?

Again, with no judgment, with no criticism. And I think that's the hardest thing in my practice is that these loving, oh my God, remarkable, amazing people are so critical of themselves. And I'm like, no, time out.

You are who you are for a reason. Let's not be critical of it. Let's understand it better.

And you know what? The person you're taking care of. We can't ignore that every single one of us has a history.

We cannot ignore every single one of us is the way we are for reasons. And reasons to understand, to help us do it differently, to help us empower ourselves, to help us give back, but also receive. And you hit the nail on the head.

These attachment styles affect how we receive and how we give back. And so again, it's just to shed some light on that this dementia journey is so complex. It's not a simple, just do this and, oh, this is all gonna work.

Wouldn't that be so nice? It's much better to understand dynamically. How have I been affected?

Who am I as a person, as a caregiver, as Tami Anastasia? And who is your loved one? We can't ignore the loved one comes with years and years and years of past experience and memories.

And don't forget, we have a relationship with this person pre-dementia, and then we have the relationship with this person when they get dementia. So there's so many dynamics playing out.

And there's also the dynamic of all of the various parents who are involved in all of this. And so the tendency might be someone might go, well, this is my style, then this is the fault of my parents.

Zita: And then you look at that and go, well, they were dealing with their own style based on what they received and what they learned. We need like an ancestry.com DNA thing of, look at compassion. How can we change our DNA to add more compassion?

And maybe look at that coming down the generations and how that might make the world a better place.

Tami: Yeah. I mean, compassion, let's start with compassion. Let's start with self-compassion first.

Oh, my gosh. Let's just start there. You know, we're so good at supporting and being there for others.

But oh, when it comes to ourselves, just so judgmental and critical. And I tell my clients, I said, you know, you didn't like your parents saying that to you. Let's break the cycle.

You know, let's not have you say it to yourself and let's reword it. And I talk a lot in the book, how to reframe things and what a golden opportunity. I mean, I hate to say that we're using Dementia Journey and I'm calling it a golden opportunity.

I don't mean it in that, in a disrespectful way. But what an opportunity for us to rewrite the scripts, message ourselves differently, give back to ourselves differently. And the world that opens up for us now to care and be cared for differently.

Zita: What perfect timing in our world for that.

May it be so.

32:35

Zita: Let's look at another attachment style. This one, the disorganized attachment. And that is all involving the absence of trust or security.

Tell us more about that one.

Tami: Yeah. So the disorganized in the early relationships, the parents were kind of both the source of comfort as well as fear. So it could be unpredictable, it could be volatile, it could be unsafe.

And so as a caregiver, I have this push-pull. When it feels too close, I back off. And when you back off, I may need to feel close again.

So it's kind of this push-pull, like I get involved, I get so involved, but oh, then it gets scary, and then I push back. It's very confusing, though. The caregiver might say, I need help, I want help, I'm drowning, I'm drowning, I'm drowning.

You offer it. No, I don't want it. I don't need it.

Zita: Oh, yeah.

Tami: So it's this push pull.

You know, we have a saying, I love you, I hate you. So it's this push pull. I can say, I need help, I need help, I need help, I need help, and I'm drowning.

Please, please, please. But then I don't accept it when it's offered because that gets too scary too. So it's this push-pull, and you can see it again, inconsistent.

Feel safe and then unsafe, feel safe and then unsafe. And it can change on the dime who the person is, what the dynamics are of the relationship.

And all of this plays out given the different relationships in our lives, where we are, the events in our lives.

So you can see that I may give and then I pull back, or I receive and then I distance you, because I received and now that could feel too threatening. So the best way to describe sort of a push-pull.

Zita: When somebody has that kind of attachment style, how might that play out where the caregiver wants to establish a connection with the person being cared for?

Let's say it's a parent-child situation, and they've been apart for a long time, and maybe the child moved away, and maybe a couple decades have passed, and there's only been connections and holidays or something like that.

But with that kind of a style, an attachment style from childhood, and now the parent needs somebody to be a caregiver, how does the child feel safe in making an attachment?

And especially when dementia is involved, the person with dementia, gosh, I remember what Dick would have these violent hallucinations.

Tami: Yes.

Zita: This most gentle, gentle man.

Tami: Yes.

Zita: These, oh my gosh, these were horrible. If I had that kind of attachment, I can see myself looking at that and go, how would I feel safe even trying to make in the kind of attachment I would need to make to be an effective, compassionate caregiver?

Tami: That's a great question. So the tendency in caregiving is you're going to swing between being over involved, over involved, over involved, and then you're going to withdraw.

And so you'll feel torn between being responsible, obligation, duty, and then you have to protect yourself. So this organized also has a real hard time regulating their emotions. So it's going to be that push pull, right?

I'm over involved, things are going well, and then, oh gosh, then, you know, how unpredictable dementia can be, right? And then something goes haywire, then I pull back, I withdraw.

Or again, I can't regulate my emotions, so I really react, and I overreact, and I get so angry. And then I withdraw for a little bit until it feels safe again, and then I reenter.

So this is where we'll talk a lot about in caregiving, how to set boundaries, understanding how to protect yourself emotionally. And if I have these different attachment styles, how do we protect you with boundaries?

How do we do that with healthy boundaries, task boundaries, physical boundaries, emotional boundaries?

There's boundaries that we can develop, and here again, make them healthy, so that not only are you protected, but that you can have and be in a relationship, whether it's dementia or anyone, and still know that you have good footing, still know that

you can protect yourself, still feel grounded, and not have to go through these cycles, because these cycles are hard for caregivers. One minute I'm all in, the next minute I just, I hate, and then here again, we start feeling upset with ourselves.

Why am I so angry, and then I can be so loving, and it just becomes very complicated.

Zita: But if the caregiver is feeling all that, and the caregiver is looking at this going, oh, I hate how I'm doing this, what I see happening is, then the caregiver, in an effort to make it better, suppresses the emotion, like, I feel that, but I don't

do it, don't say it, don't feel it, put it down, cover it up. And then at some point, though, it's like a volcano.

Tami: Oh, yeah, and it could come out totally inappropriate times, right? Like, oh my gosh. And then they get labeled as being overreactive and, you know, overly sensitive.

And it's just to understand, this is how I've learned to be in relationships, how I've learned to cope, how I've learned to protect myself. And again, the caregiver is the one that is navigating all of this and doing the best that they can.

And because it swings and there's so many dynamics, there's so many complexities, how can I shed some light on understanding why we do what we do and just be open minded to understand? Because understanding, you know, knowledge is power.

And we forget, the one thing we have no control over is how dementia is gonna progress. We have no control over how dementia is going to impair your loved one's brain. The one thing I have control over is me, myself, and I, right?

That's the one thing, that's the last person I can afford to hate, that's the last person I can afford to beat up and berate. I need to be that person that feels better about who I am, and I'm doing the best that I can.

And then understanding these dynamics opens up doors for change. Change for you, and also change in how we relate, how we cope, how we live with ourselves.

Zita: Tami, let's say the loved one is in a memory care facility. And so the family caregiving member comes in today, comes in tomorrow, comes in the next day, and the next day, and then is gone for a week. Just like, I can't deal with that anymore.

I just don't show up. Like, I'm just not there. And then later it's like, okay, I'm gonna get better, and I'm gonna come back, and I'm gonna visit again.

I'm gonna call again. I'm gonna whatever, and then just like disappear.

Tami: Yeah, but I think here again, I'm talking about attachment styles, but there's some human-ness throughout. There's a breaking point for all of us. So even the secure attachment could come in and just say, I need a break.

The difference is the secure attachment saying I need a break. This is a lot for me. I'm getting worn out.

The disorganized might be like, oh, my needs aren't, my needs, how can I say? I feel so insulted. You don't remember who I am, and I come, and I come, and I come, and it's never enough.

But, and then I just, I pull away. So the reason why I may distance myself is going to vary from person to person. Either way, I distance myself because I have needs too, right?

And I also need to protect myself.

So if I'm taking care of somebody who is abusive, both verbally or physically or emotionally, and you're repeating that pattern towards me, and you have dementia, even though we know they don't have control over the things they say and do, if I need

to step back, I need to step back for a reason, and it's to understand. So here's what I'll get. Well, Tami, I need to step back. I can't expose myself to it, but they have dementia, and I should.

And there's the should. And that should is so damaging, and we've got to correct that should. It's can.

What can you do? What will you do? What do you want to do within this development of dementia?

So we will all react a certain way. Some of us will be more grounded in why we did it, and some of us won't. It's not to say anybody's better or worse.

It's just truly understanding, no wonder. And I will tell people, you do what you have to do to take care of yourself. But I also have to sort out what's what, because the dementia person doesn't have control over the things they say and do.

But if it's triggering, we do have to take care of the caregiver. But I also want you to understand, the person with dementia may not be doing it with the same intent, and that's the difference.

When I have capacity, like I'll hear a lot, you know, my father's just lying, and he continues to manipulate me, and I have to take a time out and say, you know, lying and manipulating takes a lot of brain power. Your loved one's not doing that.

Your loved one is behaving like a person with dementia. So that clarity also has to come to the surface and help educate them to know what's dementia behavior because I'm getting triggered all over the place and trying to do that balancing act.

So the bottom line is we're all doing the very best that we can, but can I shed light on the underlying factors that can maybe be a game changer in how we survive and how we give care and what we do for ourselves, better self-care,

Zita: Yeah, that's a potent tall order.

Tami: Yeah, it really is.

Zita: And I think worth every bit of effort and also realizing that it might be one of those things that we want instantly, but it's only going to come with time.

Tami: Yes, definitely time.

And the reflection, and as we're learning more and more about ourselves and what kind of the caregiver we are, whether because of the attachment that we developed in childhood, there's something that is extra challenging because as we're learning--

Zita: Yes.  That's not like it's static.

Tami: That's right.

Zita: It's changing constantly and not for the better.

Tami: That's right.

That's right. It keeps us on our toes, right?

Zita: For sure. Yeah.

Tami: The other thing all of this does in the book is to also, we have a lot of unrealistic expectations, both of our loved one who now has dementia, and then we have total unrealistic expectations of ourselves as a caregiver.

So all of this reframing, all of this understanding is to help us, again, be more realistic in what we expect of ourselves. It's not failure. It's not weakness.

It's understanding that we have to put things in perspective in terms of what's realistic, because most of us are raised with total unrealistic expectations, and now we get to kind of change that.

And then also, the more I better, I understand the dementia brain and the behaviors and this person and their past, my expectations can be better there as well.

I think it's really, really hard, and you'll probably attest to this, that how does this person who's brilliant, high functioning, now can't tie a shoe? How can it become to the point where they can't do anything for themselves?

That is a really hard leap to make from this functioning, well-adjusted, task-oriented, successful person to having dementia, and you can't take the garbage out? You don't know the difference between a banana and a shoe?

I mean, it is heartbreaking, and it is heart-wrenching, and all of these things change, and we're just really trying to survive it.

Zita: Sure. On that note, thank you very, very, very much.

Tami: Well, thank you, and I really appreciate the kind words and thoughts, and I do hope it makes a difference.

You just put it out in the universe, and some people hopefully will benefit from it, and if they read it or they don't read it, you still hope you put something out there that's going to help.

Zita: I've asked Tami to come back, I want to talk about the family roles we take on in childhood, and then how those family roles affect our caregiving experience.

I also want to talk with Tami about what it's like if you are the caregiver and you find yourself, for whatever reason, in a position where you're caring for someone who abused you.

Until then, let me just say that the book we're talking about is called Dementia, Caregiving, and Personal History, How to Help, Cope, Connect, and Heal.

You can learn more about Tami and about her book at her website and that's simply tamianastasia.com. I'll put a link to all of that in the show notes.

Finally, if you're a regular listener, like Patricia in Florida or Mary in Cleveland, you know that I always close the show by reminding you to take good care of yourself. And that those words aren't fluffy, they're fierce...because we need to survive.

Thank you for listening all the way to the end.